Accurate Representation Of Patients’ Opinions For Decision-Making: Are Online Health Communities Good Candidates?

Rais, Shirley; Radoszycki, L.; Dourgnon, Paul; Rochaix, Lise; Chekroun, M

doi:10.1016/j.jval.2017.08.2153

Cited by 14 publications

(10 citation statements)

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“…Another limitation is the recruitment method, in which only those patients with the ability and competency to use the Internet would be likely to respond to the survey (likely excluding post-stroke and TBI patients with more significant cognitive dysfunction). As mentioned earlier, the Carenity community likely engages younger, female patients, which may account for the younger sample than in other reported surveys (20). This skew to a younger, more cognitively-able sample likely explains the surprisingly high proportion of working patients.…”

Section: Discussionmentioning

confidence: 84%

Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity

et al. 2020

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Background: Botulinum toxin-A (BoNT-A) injections are first-line treatment for adult spasticity. Prior patient surveys have reported that BoNT-A treatment improves quality of life but that symptoms usually recur before the next injection. We aimed to explore, in-depth, patient perceptions of the impact of spasticity and the waning of BoNT-A therapeutic effects. Methods: An internet-based survey was conducted through Carenity, an online patient community, from May to September 2019 in France, Germany, Italy, UK and USA. Eligible respondents were adult patients with spasticity due to stroke, traumatic brain injury (TBI) or spinal cord injury (SCI) who had ≥2 previous BoNT-A injections. Results: Two hundred and ten respondents (mean 47.2 years) met screening criteria and had their responses analyzed. Overall, 43% of respondents had spasticity due to stroke, 30% due to TBI and 27% due to SCI. The mean [95% CI] injection frequency for spasticity management was 3.6 [3.4-3.7] injections/year. Respondents described the time profile of their response to BoNT-A. The mean reported onset of therapeutic effect was 12.9 [12.1-13.7] days and the mean time to peak effect was 5.0 [4.7-5.4] weeks. Symptom re-emergence between injections was common (83%); the time from injection to symptom re-emergence was 89.4 [86.3-92.4] days. Muscle spasms usually re-emerge first (64%), followed by muscle stiffness or rigidity (40%), and limb pain (20%). Over half (52%) of respondents said they had lost their self-confidence, 46% experienced depression and 41% experienced a lack of sleep due to their spasticity symptoms in the past 12 months. Following a report of symptom re-emergence, the most common management approaches were to add adjunctive treatments (36%), increase the BoNT-A dose (28%), and wait for the next injection (26%). Seventy two percentage of respondents said they would like a longer lasting BoNT-A treatment. Conclusions: Patients with spasticity can expect a characteristic profile of BoNT-A effects, namely time lag to onset and peak effect followed by a gradual decline in the symptomatic benefits. Symptom re-emergence is common and has significant impact on quality of life. Greater patient/clinician awareness of this therapeutic profile should lead to better level of overall satisfaction with treatment, informed therapeutic discussions and treatment schedule planning.

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Section: Discussionmentioning

confidence: 84%

Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity

et al. 2020

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“…In 2019, it was estimated that 86.7 percent of people living in developed countries used the internet [ 53 ]. Moreover, it has been shown that Carenity communities, when compared with the SNIIRAM database (a quantified claim database available in France where all individual refunding acts are listed but without any disease-related information), reflect the main characteristics of online users willing to share their experience with a disease, with an over-representation of female patients aged from 25 to 54 [ 54 ]. The study population was based on patients registered on the Carenity platform from Europe and USA and did not include other relevant sampling procedures and methods.…”

Section: Discussionmentioning

confidence: 99%

Impact of the COVID-19 Pandemic on Patients Affected by Non-Communicable Diseases in Europe and in the USA

Pécout¹,

Pain

Chekroun

et al. 2021

IJERPH

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An international online patient community, Carenity, conducted a patient study in two independent waves among adults affected by non-communicable diseases (NCDs) in Europe and in the United States of America (USA). The study aimed to assess the real time impact of the coronavirus disease 2019 (COVID-19) on the medical conditions of patients with NCDs, their access to health care, and their adaptation to daily life as well as to describe their sources of information on COVID-19 and their needs for specific information and support. During the pandemic, 50% of the patients reported a worsening of their medical condition, and 17% developed a new disease. Additionally, 26% of the respondents reported an impact of the pandemic on regular/long-term treatment intake. 54% of the patients felt very or completely socially isolated and reported a strong impact of the COVID-19 pandemic on their stress level and state of mind, with higher levels observed in the USA compared to Europe. 59% of the respondents wished to have received additional information regarding the risks associated to their medical condition during the pandemic. Television was the most used source of information, whereas physicians were the most trusted one. This study describes the substantial impact of the COVID-19 pandemic on NCD patients.

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“…As individuals registered in patient communities may likely be heavily burdened by their condition, our study population may overrepresent highly symptomatic and polymedicated patients. Nevertheless, it has been shown that characteristics of patients in Carenity communities reflect the main characteristics of web-based users willing to share their medical experience but with an overrepresentation of female patients aged 25-54 years [ 32 ]. This study exclusively included patients registered on the French Carenity platform and did not include other relevant sampling procedures and methods.…”

Section: Discussionmentioning

confidence: 99%

Patients’ Perspectives About the Treatment They Receive for Cardiovascular Diseases and Mental Disorders: Web-Based Survey Study

Courtet¹,

Pécout²,

Lainé-Pellet³

et al. 2022

JMIR Form Res

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Background Noncommunicable disease (NCD)–related deaths account for 71% of deaths worldwide. The World Health Organization recently developed a global action plan to address the impact of NCDs, with the goal of reducing the number of premature NCD-related deaths to 25% by the year 2025. Appropriate therapeutic adherence is critical for effective disease management; however, approximately 30%-50% of patients with an NCD do not comply with disease management activities as prescribed. Web-based patient communities can represent platforms from which specific information on patients’ perception of treatment adherence can be gathered outside of a clinical trial setting. Objective This study aims to better understand patients’ perspectives regarding therapeutic adherence and iatrogenic risk in 2 major groups of NCDs for which poor disease management can have fatal consequences: cardiovascular diseases and mental disorders. Therapeutic adherence, motivational factors, patients’ awareness and perception of iatrogenesis, and treatment tools used by patients were assessed. Methods A web-based survey was performed among patients with cardiovascular diseases or mental disorders or both conditions who were registered on the French Carenity platform, a web-based community in which patients with an NCD can share experiences and receive support and information. The study inclusion criteria were defined as follows: diagnosis of cardiovascular disease or mental disorder or both conditions (self-declared), age ≥18 years, residence in France, registration on the French Carenity platform, and ongoing pharmaceutical treatment for the condition. Patients who met the inclusion criteria were then invited to complete a self-administered web-based questionnaire that included questions addressing therapeutic adherence and iatrogenic risk. Results A total of 820 patients were enrolled in the study, including patients with cardiovascular diseases (403/820, 49.2%), patients with mental disorders (292/820, 35.6%), and patients with both cardiovascular diseases and mental disorders (125/820, 15.2%). The mean age of the participants was 55.2 (SD 12.7) years. We found that 82.8% (679/820) of patients experienced adverse effects of medication. Patients tended to perceive themselves to be more adherent than they actually were; a significant number of patients disregarded their prescription and stopped or interrupted medication without consulting with a doctor. Patients with cardiovascular diseases were nearly twice as adherent as patients with a mental disorder (P≤.001). Adherence was significantly associated with gender (P≤.001), age (P≤.001), and treatment complexity (P≤.001). Finally, for each disease type, 3 patient profiles were identified, which provide interesting insight for improving therapeutic adherence and adjustment strategies specifically according to patient behavior. Conclusions This study provides insight into the perspectives of patients receiving therapy for cardiovascular diseases or mental disorders or both conditions, which could help improve the management of NCDs and prevent premature death. Our study also shows that web-based patient platforms provide new opportunities to improve disease management by understanding patients’ experiences.

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Accurate Representation Of Patients’ Opinions For Decision-Making: Are Online Health Communities Good Candidates?

Cited by 14 publications

References 0 publications

Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity

Patient Perspectives on the Therapeutic Profile of Botulinum Neurotoxin Type A in Spasticity

Impact of the COVID-19 Pandemic on Patients Affected by Non-Communicable Diseases in Europe and in the USA

Patients’ Perspectives About the Treatment They Receive for Cardiovascular Diseases and Mental Disorders: Web-Based Survey Study

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